Dan Gymer Funding for SDR Operation
Donation protected
My little brother Dan (8 year old aspiring Pokemon film director;) has severe, level 5 cerebral palsy, meaning he’s in a wheelchair and needs support to do all the basic, daily tasks we take for granted- taking himself to the toilet, sitting, supporting himself, playing.
He requires round the clock one-to-one support and care to get through each day.
It also means he has very high spasticity, tight and painful muscles, a serious risk of developing complications which will require surgery (warned about a possible hip and leg operations), limited motor function and difficult to understand speech.
In all the time we’ve been together I’ve never heard him complain. Not once. With all the challenges he faces and all the restrictions forced upon him he’s never asked for any different- he’s just accepted what he has. Managing to be the most expressive, sarcastic, outspoken kid I know- with the wickedest laugh. For once we have an opportunity to give him something.
Dan was assessed for SDR (selective dorsal rhizotomy) the only surgical procedure that can permanently reduce muscle spasticity; the physio team were confident this treatment would improve his quality of life: taking away the stiffness and pain in his muscles, lower the risk of future surgery, possible improvements in other aspects such as fine motor skills and speech.
This is a revolutionary procedure that he will feel the benefits of for the rest of his life.
However, due to ableist NHS criteria, only children with less severe (stage 2/3) CP qualify for funding, as they will likely see vast improvements in their ability to walk- this is seen as a worthwhile investment.
While kids who are most affected and most vulnerable are written off as a waste of resources purely because even after treatment they will still lack that capacity.
Almost comical how a procedure designed to help disability discriminates against those who are simply ‘too disabled’.
They are asking us to pay £12,000 for the operation, therefore hitting people who are likely to have a more demanding home life and are often receiving benefits, and are already under financial strain.
Please take a minute to share:)
We will be truly grateful for any donations you feel able to make.
(Big sister Beth)
He requires round the clock one-to-one support and care to get through each day.
It also means he has very high spasticity, tight and painful muscles, a serious risk of developing complications which will require surgery (warned about a possible hip and leg operations), limited motor function and difficult to understand speech.
In all the time we’ve been together I’ve never heard him complain. Not once. With all the challenges he faces and all the restrictions forced upon him he’s never asked for any different- he’s just accepted what he has. Managing to be the most expressive, sarcastic, outspoken kid I know- with the wickedest laugh. For once we have an opportunity to give him something.
Dan was assessed for SDR (selective dorsal rhizotomy) the only surgical procedure that can permanently reduce muscle spasticity; the physio team were confident this treatment would improve his quality of life: taking away the stiffness and pain in his muscles, lower the risk of future surgery, possible improvements in other aspects such as fine motor skills and speech.
This is a revolutionary procedure that he will feel the benefits of for the rest of his life.
However, due to ableist NHS criteria, only children with less severe (stage 2/3) CP qualify for funding, as they will likely see vast improvements in their ability to walk- this is seen as a worthwhile investment.
While kids who are most affected and most vulnerable are written off as a waste of resources purely because even after treatment they will still lack that capacity.
Almost comical how a procedure designed to help disability discriminates against those who are simply ‘too disabled’.
They are asking us to pay £12,000 for the operation, therefore hitting people who are likely to have a more demanding home life and are often receiving benefits, and are already under financial strain.
Please take a minute to share:)
We will be truly grateful for any donations you feel able to make.
(Big sister Beth)
Organizer
Kate Gymer
Organizer
England